ME and Ophelia

LAURA HILLENBRAND, SEVERE CFS SUFFERER SINCE 1987
Author of the stupendously successful Seabiscuit: An American Legend

These two articles - featuring the gripping story of Laura Hillenbrand - are a must for anyone interested in gaining insight into the life of a severely affected sufferer.

See my links column (on your right) for more on Laura Hillenbrand and Seabiscuit the film, released July 2003, starring Jeff Bridges, Chris Cooper, and Tobey Maguire as the jockey.

AGAINST THE ODDS
Laura Hillenbrand Surmounted Illness to Cross the Finish Line With Seabiscuit

Laura Hillenbrand on chronic fatigue syndrome:

*I definitely had a lot of problems with people thinking this was some sort of hypochondria or some sort of willful attempt to get attention.*

*This illness is to fatigue what a nuclear bomb is to a match,* she says. *It is an absurd mischaracterization.*


AGAINST ALL ODDS
Illness made Laura Hillenbrand a long shot to finish the acclaimed book Seabiscuit

Extract:

*Seabiscuit is a riveting story about a gimpy legged horse who defied all the odds to become one of the greatest racers in history, one so beloved that his name was mentioned in more newspapers articles in 1938, the year of his sensational triumph as Horse of the Year over archrival War Admiral, than either Franklin Roosevelts or Adolf Hitlers. It is a masterpiece of reportage, chock-full of arresting detail.*

Extract:

*The Illness got me used to accepting that I could not do or have very much. All possibility disappeared from my life,* says Hillenbrand. *Now, with all this love coming in and people believing in me, I can believe in myself. So in a way, Seabiscuit is to me what he was to people in the Depression. He is possibility.*

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FANS FLEX THEIR MUSCLE ONLINE

When football teams face a crisis, supporters take the fight online

On reading this, the ME Association stories (below) sprang to mind:

*When football teams face a crisis, supporters take the fight online. Mike Pattenden discovers how net campaigns can save or sink a club.

There was a time when football supporters paid their money at the turnstile, cheered on their team and then went home. Clubs were controlled by unaccountable chairmen, and the paying public had no hand in the running of the club and no representation. The internet has changed all that.

Whether it be saving clubs on the brink of extinction, protesting against the men in suits who run the game or even choosing which strip the boys will wear next season, the internet has proved pivotal in empowering fans. The balance of power is tilting from the boardroom to the terraces.*

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BITTER ROW ENGULFS ME ASSOCIATION

Extract:

*The ME Association, the UKs oldest charity for the chronic fatigue illness, could face closure as it struggles to cope with a bitter feud between its new chief executive and its former chief medical adviser.*

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THINKPIECE: INTERNET USERS HAVE *HIJACKED* FUNDING APPEAL
By Val Hockey, Chief Executive of the ME Association

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The two articles above - re The ME Association (MEA) - are not only nasty attempts at character assassination by Ms Val Hockey on Dr Charles Shepherd, our long serving medical adviser, but also an insult to the intelligence of ME patients, carers, support groups, members and ex members, and that of Dr Shepherds.

Dr Shepherds reputation and future, along with that of ME patients, is at stake during this *bitter row which engulfs the MEA* as it seems that Ms Hockey is, quite clearly, out to destroy him by using him as a scapegoat for her wastage of MEA funds on an unnecessary, and time consuming, *corporate style* modernisation process, whilst failing to adequately represent ME and sufferers in the five years that she has been in office.

In the past few years, the ME Association has been drained of its best assets and resources, both financial and human, and over the past few months Ms Hockey has unashamedly continued to waste association time, money and resources on a personal vendetta against Dr Shepherd and is using, as her vehicle to carry it out, the name of our charity.

Many other chief executives manage to provide good leadership and man management skills to steer people and organisations through complex and difficult situations. It is what they are paid to do.

Where is her consideration and concern for the ME patient that her performance and conduct is letting down, upsetting, distressing and depressing? We patients have enough battles to contend with.

If Ms Hockey and the MEA Board, *the only people in command of the facts*, were as passionate about trying to save the ME Association as she portrays, she would have stepped down or, at the very least, taken a cut in pay during the latest financial crisis. A crisis for which she refuses, in her current role as both chief executive and company secretary, to explain properly or take any responsibility.

It seems to me that Ms Hockey is selective as to when and where and to whom she communicates whilst hiding behind the MEA Board and blaming MEA woes on vociferous ME patients, their long standing medical adviser, ME support groups, carers and internet users, in fact everyone, except herself.

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THE ME ASSOCIATION
Request for renewal of annual subscription and membership

I have just received a letter from the ME Association, dated 29 July 2003, stating that my membership renewal is due on 1 August 2003 and they would like to invite me to renew.

The letter went on to say that the total for the 60 day appeal (for one hundred and fifty thousand pounds by 14 July) has not been met and that the organisation remains viable with certainty to the end of the year and full information will appear in the Summer magazine.

They are asking me to pay a full 12 month subscription in advance. Printed on the letter is a list entitled *12 reasons to be a Member of The ME Association*.

The following seven reasons are of no interest to me (my reasons are in brackets):

1) Support connect service by email, phone, fax or letter (too few hours, lines are always engaged, not for severely affected sufferers)

2) Range of products and Dr Shepherds book *Living with ME* (I do not use oils or herbs; I have the book)

3) Free access to MEA register of health professionals (of no use to me)

4) MEA Financial Services (they must be joking)

5) Affordable Medical Alert bracelets (not useful)

6) Professional Education towards enhanced partnership working with ME/CFS patients (chronic fatigue illness)

7) Opportunity to train as a volunteer (I am horizontal 23.5 hours per day).

The remaining five reasons are of interest to me (my reasons for disappointment in brackets):

8) Quarterly ME magazine (represents ME as a chronic fatigue illness and not a physical illness as defined by Dr Melvin Ramsay)

9) Quarterly Research and Scientific Bulletin (same as for No. 8)

10) Government Representation, your experiences and views represented at the highest level of government (same as for No. 8)

11) New Research Initiative, opportunity to influence the research into ME carried out from the Ramsay Research Fund, managed by The ME Association (I am still waiting for news on the outcome of MEA funded research project, on severely affected sufferers, started in December 2002 by Dr Pheby at Bristol Uni SW)

12) Belonging to a charity whose policy and mission is to be non judgmental, balanced, evidence directed and empowering (how empowering? my computer is empowering).


I am upset at having to think about this, and wonder what the founding father of ME, Dr Ramsay, would have made of it all.

The MEA has been in existence for some 27 years and, being a charity, if needs must, could have been scaled down a few years ago to function quite easily with quality (not quantity) staff, a computer, printer, photocopier, website, telephone and mailing service.

Over the past seven years, Simon Lawrence, Co-ordinator of The 25% ME Group, has achieved wonders for thousands of ME sufferers throughout Britain and abroad, on a shoe string, in a wheelchair, in pain and poor health, in fact more than the two main ME charities, with all their money, put together.

Thank God for Simon Lawrence and The 25% ME Group.